Author: Dave

Balancing Out The Hard Stuff

I followed my son as he ran on to the field at the football stadium. He sprinted down the same tunnel as the players, past the same motivational signs, and on to the same grass. Underneath his coat he wore the team jersey but with their dark green helmet clearly visible on his head. We stood on the field and looked at the 60,000 seats from the same perspective that the players do. The experience was very, very cool.

I was grateful to be standing on the grass with him. I smiled as I watched his face wear a combination of amazement and excitement. This wasn’t an experience that many people get, but it was one of many that my son has had. When he was in the hospital, he met athletes and superheroes. He attended movie premieres and dance recitals in the lobby. He won bingo and has appeared on the hospital’s closed-circuit TV. He was in a fashion show and a music video.

Thinking back on those experiences, I wonder how many of them we would have had if my son hadn’t had epilepsy. Not because they were at the hospital, but because I wouldn’t have taken advantage of them. Or I would have let my wife take him by herself because I wouldn’t have known how special those moments were. I would have missed how brave he was raising his hand to ask the ultimate frisbee team a question. I would have missed how special he felt seeing a movie before any of his friends. I would have missed the look on my son’s face standing on that field. I would have taken those opportunities for granted and missed out on them completely.

As grateful as I am for those opportunities, I struggle with the unfairness of it all. Why my sweet, innocent child was burdened with such an unfair, unrelenting condition. Why he walks around in a fog of medication. Why he has difficulty processing and why he is always exhausted. Most days, the scale seems very much tipped against him.

And yet, these moments make him smile. They let him be a normal kid. They also make him feel special. They’re a gift from the universe trying to balance out the hard stuff that my son goes through every day. They are also to teach me to appreciate the opportunities and to be present during them with my son.

I don’t know if the scale will ever be even. As his father, nothing can undo the memories of how bad things got for my son. But the part about being present? I’m grateful for the lesson.

Doing The Best I Can

As parents, we have to figure out what lessons we want to teach our children. The balance of our “when I have my own kids, I will/will not” promises are finally called due. We get to decide what to keep from our own childhoods and what to throw away. But knowing what to keep isn’t always clear and, worse, it can be terrifying. It involves shifting perspective enough to question some fundamental truths.

When I was growing up, I never thought anything I did was good enough. I took little joy from what I achieved because there was always someone who did it first, faster, or better. There was always room to grow. Accomplishments were expected but rarely celebrated. Humility was a virtue and pride was a sin. These messages became the foundation for how I felt about myself and how I lived my life.

It wasn’t always obvious to me that this part of my philosophy wasn’t something that I wanted to pass on to my son. After all, I turned out okay. I am humble and grounded. I’ve had amazing experiences. I have a good job and the best family. Knowing that there is always someone better means striving to work harder, to learn more, and to do better. It made me a perpetual student and a life-long learner.

This spirit of growth and learning is one that I want my son to have. But before he started having seizures, I wouldn’t have thought to teach him that lesson in a different way.

I remember sitting by his bedside in the hospital. The dark room was lit only by the light coming from the EEG monitor that showed constant, wild activity. His body had gone toxic from a bad reaction to one of the medicines we hoped would stop his seizures. It didn’t. The seizures raged on, and the toxicity left my son immobile, ataxic, and unable to form thoughts or words. I felt helpless. I was afraid. I prayed. This lowest of points stretched on for days.

When he could start to form words again, it was the most amazing thing I had ever seen, and we cheered. When he could hold his frail body up by himself, we cheered. When we left the hospital, even though our boy was not quite himself, it was another cause for celebration. With each milestone he passed, we cheered. If he stumbled, we acknowledged how hard he was working. There was no “but”. “But, you used to be able to do it better.” “But, those other kids are faster.” For the first time in my life, I saw what it meant to work hard and to do your best and for that to be enough. “That was great, buddy. You worked so hard to do that. I’m proud of you.” Full stop.

I hate epilepsy. I hate what it does to my son. But I would hate myself if I didn’t learn the lessons that this experience is teaching me. I don’t want to raise a child that always gets a trophy. But I also don’t want to raise a kid that thinks there is a trophy for everything and that he never gets one. I want him to be proud of doing the best that he can. That should be a good feeling, not one that should lead to shame. Epilepsy showed me how dark things can be, and these moments of grateful hope and joy can shed a little bit of light.

It turns out that this approach has led to my son working hard and liking to learn new things. Except he feels good about where he is. He is also braver than I ever was, willing to try new things outside of his comfort zone. He’s also a good sport and as grounded as any 7-year-old should be. Those qualities that I had hoped to pass on to him are there. Except his motivation isn’t based on feeling less than everyone else. His motivation is based on being the best him that he can be and being able to feel joy in that.

Before you feel bad for the other little boy in this story, this experience has taught me the same lesson. In celebrating my son’s accomplishments, I’m starting to acknowledge my own, too. Just a little. But I’m doing the best I can.

Opening Up About My Son’s Hidden Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

If you saw my son on the playground, you might not notice anything wrong with him. He’d be running, playing, and laughing alongside the other children. Epilepsy is a “hidden disability”. It can remain invisible, hiding its nature until a seizure reveals the cruel truth. For my son, his seizures occur in the early morning hours outside the view of the rest of the world. While there are traces of other symptoms of his condition, they, too, often go unnoticed. As a result, we control whether to expose his condition to the people around us.

There are times when it is easy to know that we should disclose his condition. At school, he is on a 504 plan so his epilepsy is well documented, and he has special accommodations during the day. His aide and his teacher have both come to understand him and are able to better adapt to his needs. While many of his classmates can’t grasp what they cannot see, we are as honest with them as we can be. It’s hard to not notice the aide, the breaks and the absences. Ignoring the reason for them would confuse his young class more.

Sometimes disclosing his epilepsy is a matter of safety. Before we signed him up for hockey, we asked if they were comfortable with a student that had epilepsy. On the first day of practice, we talked to the coach to remind him. When my son had a seizure on the ice, the coach was prepared and we spoke with him afterward, as well. It would have been unfair and irresponsible to hide my son’s epilepsy, even if he hadn’t had that seizure. It also could have easily traumatized his coaches. It’s bad enough seeing a seizure when you know one is possible. It’s another thing to be caught off guard.

As his father, I worry what the stigma of epilepsy will do to my son. Classmates made him feel different because his ketogenic lunch was strange. They weren’t trying to be mean, but it caused my son to hide his lunch for weeks. As he gets older, the comments may not be as innocent. My wife and I work hard to give him a good foundation of strong values and a deep sense of self-worth. I don’t want him to feel shame because he has epilepsy. But he’s my little boy, and knowing that he’ll face challenges because of his condition is hard. The idea that he’ll be stigmatized by others because of it is unbearable. That alone makes me want to protect him and never tell anyone about his epilepsy.

So I hide his struggle (and ours) from those around us. I don’t talk about his condition or volunteer any information for fear of judgment or pity. To the parents from his school and his hockey class, he’s another normal kid. To the people passing on the street and the people that see him on the playground, he blends in with everyone else. Some days, those moments feel like a gift that I don’t want to let go of.

It’s tempting to take the same approach in every situation. But epilepsy is such a big part of his life that people won’t know the real him with that piece missing. They won’t know how hard he works to function on a bad seizure day or to navigate the fog caused by his medicine. They won’t know that he has different limitations and abilities. They’ll never understand him without that piece of the puzzle and I want him to be understood. He is worth understanding.

Is it better to feel like everyone else when you know that you aren’t? Or is it better to always feel different but to always be yourself? Should the answer I’d give for myself be the same that I’d give for my 7-year-old son? These are the questions that I found myself asking as I tried to wrap up this post for epilepsy awareness. I struggled for a long time trying to come up with a concise answer, but I couldn’t. Because there is no answer. There is just doing the best that I can with what I am capable of doing and with my son always first on my mind.

NEXT UP: Be sure to check out the next post tomorrow from Audra Sisak at www.hislifewithautism.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.